Pioneering as a way of life – the territory of dementia

I have been reflecting recently of just how much of the last three decades I have spent consciously pioneering in my own life. From leaving my corporate job to starting my own business, becoming a promoter, a Director and then Trustee of Alternatives in Piccadilly, becoming a speaker and coach, becoming an author, creating a body of work and developing several brands along the way. I feel like I have been continually nudged along by inspiration into new chapters and new territories of my life, and bigger sense of who I am.

I am also aware how sometimes I find myself pioneering without consciously choosing to do so. I find myself in that place now with my mother and her journey with dementia.

My mum went in to a care home in October 2013 for some temporary respite after a fall at her home and some minor illnesses and some short hospital stays. She had successfully lived alone since my father died in 2005, but after several months she decided to stay in the home. She already had a degree of dementia, but it wasn’t too bad. She wasn’t functioning OK, but losing the motivation to things for herself. She signed papers to give me power of attorney over her financial and health affairs and said she wanted to live out her days in the care home. So I rented out her house to help pay for the care home fees.

My mum and I Christmas 2015 at her care home

Her dementia has now become very bad and her behaviour has been gradually changing. The care home management have needed to move her within the care home for her own safety. Often now she will ring my sister and I to tell either of us she is feeling awful and doesn’t want to stay in the care home any more. She asks me to come and take her home. If I say I can’t do that, she says she just wants to kill herself and then she’ll often slam the phone down on me. Then she might ring me another five times within an hour and we’ll have the same conversation, with her having no awareness of how many times we have already had this conversation. Then she says what a nuisance she is to everybody and just wants to die so she won’t be a nuisance any more.

It is heart-breaking stuff.

We are now in the territory of “Best Interest Assessment,” having external assessors involved to establish what mum’s cognitive capacity is and whether she still knows what her own best interests are and is capable of making her own decisions.

New territory again

So, yet again, I find myself in new territory, a place I have never been before, navigating my way in unknown waters. At first I wanted to resist it, judge it and say this shouldn’t be happening. But it is happening, and so I am learning to grow through it.

I am learning how I can handle her behaviour, and probably more importantly, how I handle my own emotional responses to her behaviour and what gets triggered in me. I am learning to handle my own hurt, my anger, my sense of helplessness that there doesn’t seem much we can do for her. I am handling the sense of guilt that I experience when I feel like I am the bad guy for making her stay in a place she says she doesn’t want to be in anymore.

Whilst I didn’t consciously choose to be on this path, I like to believe that somehow my mum and I “signed up” to be on this path together at a deeper level. So I am aiming to utilise this journey for my own spiritual and personal growth.

Although it is a heart-breaking experience, I choose for it to be a heart opening experience too where possible. Just last week I realised that I have found levels of kindness and patience within me that I hadn’t realised were there. Where I can, I am learning to love even more without conditions and without demanding anything in return.

Dealing with my grief

This has obviously taken a lot of emotional energy.

As well as needing to be responsible organising for her care, being a landlord for her, dealing with care home and the external assessors and looking after her finances, I am obviously on my own grieving journey, losing mum little by little. It is a strange journey, because although mum is there “there”, increasingly she isn’t the woman she has been. Sometimes I feel quite upset and bewildered by her behaviour. I have already lost most of the mother I had, and am now needing to be more of a parent to the child in her. The mother I had is going and the child in me is grieving. We don’t have much of mum anymore, we are mainly dealing with the illness of dementia and the behaviour it leads to. I feel anger with her at times, a taboo subject if I am supposed to be there for her.

And I have my own life to enjoy, my own business to run and interests to pursue.

As with all pioneering, whilst this is new territory for me, many others have been here before and many others are here now, so there is support and wisdom available to me. I have joined a local dementia support group near where I live in Finchley. Most of the members of the group are dealing with losing spouses to dementia. I have also utilised the National Dementia helpline a number of times to help me understand what happens to people when they have dementia so as not to take it personally.

Experiencing my mum’s suffering and feeling helpless to do much about it is a tough lesson for me.

Do you have any experience of being on a dementia journey with a family member or friend? I would love to hear from you.

Comments

Nick I understand and my heart goes out to you. My mum is also in a care home, she has Alzheimer’s disease. She shouts, swears, even sings..behaviour she never displayed in her previous well life. It is so painful as I miss her. I am grieving like you. And I trying my best to looking after little Ann.
My Mum’s Soul is very much alive though and I thank Great Spirit that I have deep spiritual foundations, a loving husband and friends to offer support. With love and kindness and patience xxx

Thanks Ann – yes, its a heck of a journey, isn’t it? And we still have our times of closeness and warmth – perhaps more so than before – and its more energetic now than it is words – sending you and your family love on your journey

HI Nick. I am not coming from quite where you are coming from but having lost my mum now (5 years ago) I remember only too well what you describe – the pain at losing your mum and grieving for the mum you knew. My mum didn’t have dementia but she completely changed once she went into her care home, physically and mentally, and she wasn’t the mum I once had. Every time I left the care home after visiting her I cried for half an hour on the way home as I got over seeing her. It was anguish. So I recognise the raw emotions you describe. Never stop loving your mum, never stop caring for her, this will bring you a peace when she is gone, because you know you did all you could for her and didn’t let her lack anything. Just as she did for you when you were her little boy.

Thanks Julia – yes, I often have a good cry too when I leave the care home – sorry to hear of your journey and yes, I am doing my best to keep loving and accepting my mum in the midst of it all – ebven when she rings me 23 times in 4 hours to say the same thing!

Nick, I completely empathise. My Dad has dementia and I have been grieving my loss for some years. It is so frustrating for him and for all of us, but I’m grateful that I’m on my spiritual journey as I look and feel his essence now. You have to dig very deep. Roles are reversed. I think even in the abyss he sometimes does know what is going on. We have another consultant assessment next week. With you all the way.

Thanks Karen – yes, I am sure that being on a conscious spiritual journey is a blessing for you – I don’t know how I would manage if I wasn’t. yes, sometimes mum is lucid and knows she is losing her mind, and yes, I am doing my best to help her find her soul. Sending you love on your journey

Wonderful, vulnerable post Nick, thanks so much for writing.
My Mum, who died almost 10 yrs ago had Parkinson’s &, as with may sufferers she also had dementia. Dad looked after her at home & other than that I totally understand the grief that you feel. It is heartbreaking to see your once, strong Mum disintegrate before your eyes. I also recognise that you become your parent’s parent & the anger you feel and the challenge of balancing her needs with your own.
It sounds like you’re doing all the right things, my main suggestion to ensure you take care of your own needs because this journey is a marathon not a sprint.

Thanks co much Lesley – yes, I am getting past the thought that it is selfish for me to be thinking of me too in this process – and as you say, it has already been a marathon, and could go on for years more! She is 85 but but in too bad a shape and the care home looks after her well. So, yes, I want to be able to go the distance and not burn out too soon!

So many thoughts come to mind. For me, I am remembering my Grandmother who in her final years had dementia. One day she would be a young child, having to get her satchel ready for school. Another, she was back working in hotels, having to get her uniform ready (she was a silver service waitress). And another day she would happily play card games, as the adult that she was. One thing that I always draw comfort from is that when it was time for her funeral many of the staff from the care home, where she spent her final 18 months, came to say goodbye to her. It was very touching and it was lovely to know that she was so well cared-for and held in such affection.

So what can I say to you, Nick? In a way, there is no thing, nothing to be offered, except to say that if you ever want a listening ear, you know how to contact me. And I know that you will find a beautiful path through this time of your life, and that you will take meaning and learning from it all. Blessings on you and your Mum. Dxx

Thanks Diane – yes, as you say, there isn’t always a lot to say! It is a difficult and heart wrenching journey with moments of tenderness and loveliness – thanks so much for your offer of a listening ear and sharing your experience with your Grandmother

Dear Nick, I read your post with compassion for the kind and generous person that you are. I thought I would comment about the roles and responsibilities we sign up for in this life that aren’t really the truth about us. While you’re grieving the loss of the mum you know, perhaps this is also a loosening and letting go of a role you have come to know about yourself as that of ‘son’, either good son or bad son. This is your mum but the truth about her is a beloved child who like all of us belongs to God and you can probably start to trust more that while her insane moments are opportunities for us to look/smile at shared insanity the truth is much much much deeper and greater than what you’re perceiving. I think it’s all going to be ok. Bless you!

Thanks so much for that Marisa – love it, yes, thanks it is a chance to go beyond those roles of son and mother and beyond appearances to the heart of who we both are – many thanks for that way of looking at the situation

Only someone as gifted as Nick Williams could write something as coherent and loving as he has done in describing dementia from the perspective of the carer. To add anything to his journey with his Mum would be for me inappropriate.

I would however like to share two experiences of working with people with dementia that might be helpful. These are based on developing a friendship with people in the early stages of the illness and working towards helping them stay in the moment (they know only too well how they are losing the past and how much they fear the future).

One concerns a woman who was at the stage of repeating the same question over and over. She said to me “I am genuinely not aware of repeating myself over and over BUT when I am aware of asking the question and have the sense of fear that is behind it, believe me I am frightened of what lies ahead of me”

The 2nd was a fit intelligent man again in the early stages but who up to that point played golf three times a week. Because he was forgetting his score and other small details he thought he shoujd give up playing; his family encouraged him to give up so he did. Watching him grieve for that loss was very difficult. Reading was his 2nd passion but again having mentioned that he couldn’t always remember what he had read his family encouraged him to give up so he did.

It was at this juncture that I met him and whilst it was too late to get him back playing golf (the family had sold the clubs) I did encourage him to read again. The enthusiasm he showed was in itself very worthwhile. He told me the type of book he enjoyed – non fiction and I brought him a 800 page time. On my next visit 2 weeks later he told me he had read the book and how much he enjoyed it. His wife sitting beside us said “ask him how much of it he remembers”. The man looked at me with eyes filling up with tears waiting for me to put him on the spot. I declined the bait offered by the wife and changed the subject.

Later when his wife left the room he said to me “thank you for not asking me a question about the book. I may not be able to recall all that I read in the book but I can assure you that I enjoyed reading the book 100% at the time.”

I really feel grateful that I am reading your thoughts and feelings, and that I am not alone in this. I too have been shocked and saddened by having to see and hear of my mother’s mental degeneration. The worst part for me is that we do not live in the same country, so each time I go home to her I suffer so many emotions, anger and guilt being most dominant.
Right now my daughter is expecting our first grandchild, so I am torn between my loyalty as a mother, and my guilt and anguish for my own mother.
Please pray for peace in my heart.

Hi Eseza, yes it is a heart wrenching journey – be present and allow all your feelings without getting swept away with them is one way I handle the journey. And look for any humour you can. I am praying for your peace of mind and resourcefulness to handle it